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pead app now confused

(14 Posts)
angelPeacock Thu 07-Jul-11 16:06:29

i MNers..
We had DS pead app today and DH and I have come away with Mixed emotions and feeling a little

little background. DS is 7 at the end of year 2. As soon as he was born i knew something wasnt quite right.
He was induced 4 weeks early, but weighed 6lb 2oz and was healthy. We didnt leave hospital for almost a week due to feeding issues and then was back in 24 hours after being sent home as he had jaundice and was dehydrated and lost more than his 10%.
He had reflux and was on medication untill he was abbout 5 months.
he didnt roll over till her was 9 months, sat finally at just over 10 months and was DX with Nystagmus at 14 months. He doesnt need glasses and seems to have 20/20 vision even without his head tilt.
He has had 3 sets of grommets since he was 2 and also had his addanoids out although the nose bleeds still occur.

I have always been knocked back over concerns about his behaviour etc with teachers, friends and family saying "but hes had a tough start with his eyes and hearing...." even though i know it isnt that.

we moved schools feb 2010, and they have worked wonders with him, his behaviour has improved and he is now on an IEP on SA+ with sensory services visiting regularly and has good intervention regarding his academics.

anyway, back to today......
I have been trying for a DX of AS, partly because he "fits in that box" iygwim, and partly becuase hubbys brother has it and he shows MANY signs the same as he did when younger.
we have had about 3 appointments with this pead and he seems to listen and understand. He went out to visit him at school from the last app and sent out a questionaire to us and school.
Today he started the app off with saying that he doesnt think that DS is behind or different enough to be classed as a dissorder (not a quote, cant remember exact words used). and my heart sank!
I explained that i dont want my son to have AS, but realy believe he does and explained about B-in law and how he stands out from his peers.
I even mentioned that one teacher who doesnt actually teach his class but sees him regularly, thought he had tourettes becuase of the flapping and verbal outbursts (this was difficult to say as his pead had quite bad ticks ). I said that its difficult to guage him in small meetings as he does really well with adults, and that its when you see him over time and in various settings that it becomes very apparent that he is different to his peers

anyway, he then sugested that school bring in the outreach team to which i told him the senco has now done, and he seemed to then do a little U-Turn....he sugested a referal to SALT, even though there is nothing wrong with his speech he wans an assesment of his communication skills. I obviously agreed, as this was something i wanted but thought i would get laughed at for sugesting so im VERY happy with that!
I then asked about an OT referal becuase he is so clumsy and awkward. He did a few basic tests on walking in a line, catching a ball, drawing simple shapes, and agreed on a referal. again YEY happy.

Finally i asked about his sleeping, showed him my sleep diary i have done for the past week, and told him that 12.30am is not unusual, its getting us down, its been going on for over 12 months, getting worse more recently, and he asked how we felt about Melatonin. I said i honestly didnt know, but i would try it.

so we came away from the appointment with a referal for SALT and OT, the backing for outreach and a prescription for Melatonin.

would the pead really have done that if he thought that there wasnt any basis for an AS DX??

sorry for the long post xxx

brandy77 Thu 07-Jul-11 20:00:08

Well done you! sounds like you handled it very well and are an excellent advocate for your son smile

No he wouldnt have done all the referalls if he didnt think anything was wrong. The paed that diagnosed my son yawned all the way through our meeting.

Good on you for fighting, my son also had medical problems from birth and his behaviour has always been "different", you know it as a parent dont you. I spent the last few years trying to convince CAMHS that my son wasnt right and got fobbed off with "oh well hes had a bad start, hes on lots of meds, his behaviour is due to anxiety because of the hospital admissions....etc etc etc"
My son is now diagnosed ASD, hes 6.5 and the socialising/communication problems are becoming very very obvious and the ensuing meltdowns are awful. Hes now statemented and starting a special school in September.

Melatonin is good for my son, I know for others it doesnt work, but hopefully it will settle your boy ok. I think you should give yourself a pat on the back and give it a few weeks and start chasing OT and SALT!! Thats what im doing now, if you dont make yourself heard then it delays things even further smile

Eveiebaby Thu 07-Jul-11 20:15:59

It's very positive that you came away with SALT,OT, outreach help and melatonin without a diagnosis. It is good to get SALT involved - as you say they will (or should) be able to evalute his communication skills in depth. Maybe the Paed will review once he has reports from SALT and OT. Do you have a follow up appointment planned?

LeninGrad Thu 07-Jul-11 20:32:49

Message withdrawn at poster's request.

angelPeacock Thu 07-Jul-11 20:54:30

thankyou for the replies and thankyou brandy for the very encouraging comment about being a good advocate.
i know that if you dont shout loud enough you dont get anywhere and thats always been my kind of philosopy with him, shame i got beeten down early on though sad

thankyou for all agreeing that this is good and will hopefully lead to a dx

i do have a follow up app with pead its november 8th, enough time to have seem SALT and OT and have the outreach in school. it does seem that its still a waiting game though and i had hoped some of the waiting might be over after today sad but i know its never an easy thing and its a marathon not a sprint, but no-one ever tells you parenting will be this hard.

hes been given 2mg to start and i can increas to 4 then 6 if it doesnt work straight away. the pead told me that it shouldnt go past 6 as best results are between 2 and 6mg and that if if it doesnt work by 6mg then its probably not going to work at all. its tablet form, he made out that it didnt come as a liquid confused ??
but he did say that if i need anything i can phone before the next app and i suppose if DS does struggle with the tablets i could call and see if he can change it?

I dont know how to go about chasing the appointments if they dont come through as i dont know the departments, suppose i could call the pead dept in a couple of weeks....

again thanks for taking the time to read my long post and to reply smile xx

LeninGrad Thu 07-Jul-11 21:26:28

Message withdrawn at poster's request.

angelPeacock Thu 07-Jul-11 22:52:11

how old is DS1 LeninGrad? I know my DS doesnt need a statement (yet) and the school are doing a great job for him, although i do think they dont take me seriously with him being behind (dont worry he will catch up....that kind of thing grrrr)

I do hope that with these assesments in the pipeline, it will be what we need for a DX, but i do worry that these assesments will also bring a "not bad enough for a dissorder" conclusion. Think i might start filming him everywhere and editing it down to show the "autistic" parts lol

Ben10isthespawnofthedevil Fri 08-Jul-11 05:53:05

angelPeacock You could be me with your posts.

We have also had our first paed appt and had referrals to OT and SALT. Unfortunately we can't get outreach without the formal DX. I put a very similar post on after my appt asking whether there would be any chance that we wouldn't get a DX and the viewpoint was that it would be likely that we would as the paed wouldn't do the other appts if she wasn't very sure.

Good luck with the melatonin. Luckily, I didn't need that. We just have early mornings to handle!

LeninGrad Fri 08-Jul-11 07:19:10

Message withdrawn at poster's request.

angelPeacock Fri 08-Jul-11 13:34:45

ben10 i have seen your name arround and i love it! my DS is totally obsessed with that soddin programme and its his "thing" he can tell you EVERYTHING about it hahaha.
It wasnt our first pead app, this was about our third before these referals have been mentioned nevermind done. I do hope that it does eventually lead to a DX, otherwise it will feel like we have wasted everyones time and feel very let down.

I mentioned to my mum about the Melatonin and shes almost against me giving it him, but wont actually say that becuase she knows that where my kids are concerned, i know best smile i dont even have it yet im still waiting for the chemist to call back to say when it will be available hmm

leningrad Im not sure i need to plug any gaps, or indeed how i would if i found any. I know the school are doing what they can for him and im not sure there would be much more they could do without 1-2-1/statement. Ive never had a problem with what the school provide for him, more a case of how they talk to me,or should i say how the SENCO talks to me.

LeninGrad Fri 08-Jul-11 15:49:05

Message withdrawn at poster's request.

angelPeacock Fri 08-Jul-11 17:57:10

He is behind, he is leaving year 2 on a 1b/c.
I just dont know how i could do anything more with him. He does try, he workes very hard even with a short attention span and needing plenty of encouragement, its like its just not going in...IYGWIM.


LeninGrad Fri 08-Jul-11 20:09:25

Message withdrawn at poster's request.

angelPeacock Fri 08-Jul-11 21:20:28

we have come a long way with the social side since moving school. Since feb 2010 he has calmed down so he doesnt hit out (very often) at school, he no longer needs a daily star chart, just a weekly award (he was on 7 stamps a day, one for each part of the day so a VAST improvement), and he has genrally calmed down.
I do worry about september and how things may revert or alter etc, but i dont dwell as we can only cross that when/if it happens.

good luck with everything leningrad, its hard to get an even load of teaching and social, so i know why your concentrating on social atm. xx

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